Wednesday, August 15, 2012

Today has been so busy.......Kaidence had a great night. After being extubated at 3:00 she had to wait until 8:00 to drink. I think that she asked me every 5 minutes what time it was. At last she was able to drink and drink she did! Last night Kaidence woke up asking for the "game basket for when she got her heart". Back in December we were given an incredible basket full of games, gift cards and candy. We told the kids to save it for when K got her heart. That way we would have something fun to do together at the hospital. Sure enough, Kaidence (drugged and all)went through that basket last night and she was so excited. Today she has been a little sleepy. It's funny because she will open her eyes, try to sit up and ask to play a game. Then she is asleep within 10 seconds of that. I promise sweet girl, you will have plenty of time to play all those fun games!

Today she needed to go get a new picc line behind her knee because the one in her arm needs to be removed due to the blood clot. They are also planning on pulling 2 lines in her groin and 2 lines in her neck. She has spent the whole day sleeping. Dr. K, her surgeon wanted to have her up and walking today but that is unlikely since she is still sedated from the procedure. Also, she has an effusion on her left side because Dr. K was unable to get a chest tube in due to scar tissue (likely from the artificail heart 5 years ago). She is pooling blood in on that side but they are hoping it will be absorbed by her body. She still has in 3 chest tubes but she is dong well with her bleeding. Today she also recieved a blood transfussion (thank you to all who donate blood)!

This afternoon her aunts and brothers came to see her. They held her hands but she slept the whole time. Her aunts decorated her room and her brothers brought her roses from Angel Grandma's (k's namesake) garden.

So sorry this post is all over the place. Lots going on and little brain power left in me. My heart and mind have been with the family who gave us this heart. My prayers are for them. So much gratittude for saving my childs life as their world crumbbled around them. Please continue to pray for them. Much love to you all......

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About Me

I spent 127 Days at Primary Childrens Hospital in the PICU. I was born healthy but became ill after catching a virus that caused my Cardiomyopathy (an enlarged heart). My heart was not pumping and I was dying. We were granted special government permission upon emergency use to implant the "Berlin Heart" an LVAD (Left Ventricular Assist Device) for babies. This would give me more time to wait for a heart. I was the first patient in the state of Utah to receive this device. I received the experimental device in November 2007. It saved my life and I received a heart transplant December 2007, two days before Christmas. My new heart has given me a new chance at life and I am forever grateful to the fammily that gave me my "Angel Heart". Today I am 5 years old and awaiting a second heart transplant due to severe Coronary Artery Disease. My family and doctos were shocked to learn that I needed a new heart once again.
Our little Kaidence is a tough fighter. Our little Fairy of Faith.
This blog documents her Journey of FAITH!